Adventures of a Misbehaving Uterus

In high school I took a creative writing class and my teacher had us practice writing all different types of poems.  One type was a “name poem” where we had to describe a person poetically by saying what their name reminded us of.  I wrote about the women in my family.  Here is the stanza I wrote about my sister:

I will say Kristen because she reminds me of flapping butterfly wings, and snowmelt streaming with laughter as it carves a spring path through green foliage.   
Kristen is the sun that shines yellow warmth on cold, grey earth.
She is the licorice tea that soothingly coats the back of your through.
And she is the duckling that becomes a swan.

My poetic prowess notwithstanding (ha!), what was clear then that remains true now is how dearly I love my sister.  She is still a comfort to me.  She is still warm and bright.  She still has a joyous spirit.  And even though she’s a grown-up swan, sometimes I still can’t help but want to protect her like a baby duck.  

It’s not entirely my fault, I learned to be a helicopter-sister early.  When my mom brought Kristen home from the hospital, she told me she was my baby and I took that seriously.  Before Kristen was verbal, I used to speak for her, “no, mom, Kristen doesn’t want a banana, she wants apples…” It came from a place of love.  I wanted things to be perfect for her.  I wanted her never to hurt. 

Our relationship has shifted several times over the course of our lives.  As children we were playmates and comrades.  In young adulthood we became friends.  But even in friendship, we retained an older-sister/ younger-sister dynamic.  I was still hitting life stages before she was.  I still had a surplus of knowledge to share.  I still wanted to make sure she avoided that damn banana.  Then she became a mother. 

The day my nephew was born my little sister transformed before my eyes.  She was still my friend, but she was also something new, something I wasn’t.  Our dynamic shifted.  I no longer had advice to offer. Instead, I marveled as she entered a life phase ahead of me.  Instead, I learned from her for a change and wanted to follow in her footsteps.

But, while she grew her family through two more pregnancies, I suffered my six losses, and our relationship readjusted.  In recent years we have lived vastly different experiences.  Sometimes it has been hard to relate to one another.  There have been messy feelings involved.  I didn’t feel like anyone – even my butterfly-licorice-tea-sister – understood my pain. 

Our parents did not have a happy marriage.  We heard a lot of arguing when we were little, and it would make Kristen scared.  She used to crawl into bed with me and I would hug her, and we would both feel better.  It was us against them.  We refused to be divided even if they were. Maybe that’s why now, even as adults, whenever she’s hurting, I want to swoop in and stand next to her in the fire; make her pain my pain, convinced that together we can bear it more easily.  Maybe that’s also why it felt so disorienting to be alone in my own grief. 

Because it no longer works like it used to.  We no longer live in the same house.  We no longer share the same enemies, even if we sometimes fight similar daemons.  We can no longer operate as a team.  I know Kristen grieved with me after my miscarriages.  I think she also grieved for me.  I think she felt indignation and unfairness on my behalf and wished she could have had kids for me in my place.  But she couldn’t stand in the fire with me.  She couldn’t make me a mother.  All she could do hold my hand while I burned.  It’s all any of us can do when someone we love is hurting.

This new phase of our relationship requires better communication.  Since we don’t have an innate understanding of one another’s circumstances we have to listen more.  We validate when we can’t relate.  We talk about feelings rather than solutions.  It’s good. Yet I’m sure we’ll shift again.  If or when I become a mother, Kristen will have the surplus of knowledge. She will have the advice to give, and I will be the baby duck. I’m looking forward to it.

I found a beautiful but short-lived quiet in the week between Christmas and New Year’s.  I had given myself permission to take the week “off,” so I felt absolutely no pressure or compulsion to make phone calls, check email, post on social media, or be “productive” in any way.  My mornings involved sitting in front of my happy light while drinking coffee and working on the crossword, followed by yoga and then whatever I fancied.  It was a nice way to end the year and I felt excited to wash my hands of 2020 and begin anew. 

Unfortunately, this week hasn’t been going quite as smoothly.  The news continues to be crazy. My dog was hit by a car! (She’s fine, thank God) And I’ve struggled to return to professional routines while maintaining that sense of inner calm I had just days ago.  It’s disappointing. I guess I forgot (again) that just because the year changes, life doesn’t magically readjust.  I started 2021 with all the same demons I carried with me through 2020.  It’s just more frustrating this year because last year was such a suck-fest. 

One of the demons that continues to creep along beside me is chronic mild depression.  This existed long before my miscarriages, and while I’ve done a lot of work on my grief to move through the pain of pregnancy loss, I’m not sure I will ever be fully free of mental illness. 

A lot of people don’t understand depression, and I think it stems from a basic misconception of the word itself.  We think of “depressed” the same way we think of “sad,” and we’ve learned that when people are sad, they are usually sad about something. “What’s wrong?” is the most common question I get from friends and family when I tell them I’m feeling depressed.  And it doesn’t make sense to them when I my answer is that nothing is wrong, feeling depressed is just how I am sometimes.

Depression for me is more about energy.  It’s not a feeling of sadness about something specific, but rather an inability to take pleasure in anything generally.  Usually, this leads to a conversation about all the wonderful things in my life and the importance of practicing gratitude.  But this is another misconception.  Because you can be grateful for all the things in your life and still have low energy.  I often experience enjoyment and gratitude during bought of depression.  It’s just that the feelings seem muted, like I’m watching a movie through a window rather than being in the room.

My husband sent me a TikTok video recently of an inspirational speaker who equated negative thought patters to weeds, explaining that they will take root anywhere and grow with no help whatsoever.  Conversely, positive though patterns, like orchids or roses require the right environment and proper care in order to flourish.  I love this metaphor.  Firstly, because for the life of me I cannot keep my plants alive; but more so because I think we all need to put in the effort to prune our weeds and maintain our mental gardens. 

But if you’ll allow me to take this metaphor a bit further, for those of us who battle depression there’s an extra step, because our soil isn’t accommodating.  We have more work to do for our garden to grow.  That’s just how it is. This is one of the reasons I started making what I call “Happiness Charts.” 

About five years ago, my husband and I were in Maine with his parents, and I remember sitting at the edge of their dock looking out over a smooth, icy lake and snow-capped trees, and noticing how peaceful I felt.  I wanted to figure out how to give myself more moments of peace like that throughout the year, so I began listing all the activities that brought me joy personally as well as those things that made us feel like closer partners. 

The first chart was pretty simple: We wanted to leave the country once a year, escape into nature once a quarter, and do something active together once a month.  And these simple goals worked well for us until we moved to Seattle.  I, in particular, found that regular time in nature wasn’t enough to compensate for how much I missed family and friends back in Chicago.  As a result, we had to think differently about what brought us joy as a couple and as individuals.  We’ve iterated a couple times since then, and this year my husband and I each have a chart of our own, plus one for our relationship. 

My personal chart this year includes the following: Once a quarter visit my immediate family.  Once a month spend time with girlfriends in Seattle.  Once a week do something active as well as sometime creative.  Our relationship chart includes things like camping, game nights, dinners/date nights, etc. 

It seems silly, but I’ve found this an incredibly helpful process and practice for a few reasons.  Firstly, it forces me to sit down and think about the activities that renew my energy rather than deplete it.  Secondly, it reminds me to actually prioritize engaging in those activities.  Finally, it gives me a visual reminder of all the things I’ve done for myself throughout the year so that when I have down days, I have proof that I didn’t have a down year.  One of the most intrusive thoughts for any depressed person is the one that says it will always be like this and you will never feel better again.  It’s not true, so I encourage you to give yourself something to prove it.

This is actually one of the first ‘comics’ I drew when I decided to start blogging, but up until now, I haven’t been able to find the right words for it.  Or maybe I always had the right words.  They are just angry words, so I didn’t want to share them.  But after reading my recent newsletter from Andrea Syrtash, Founder of Pregnantish, I decided it was time.  

In her letter, Andrea mentions an AirBnB owner, who after hearing what she (Andrea) did for work, remarked that she (the owner) knows so many women having issues with pregnancy and wished that they took better care of their bodies and/or didn’t wait until 48 years old to start trying.  [Loaded sigh.]

Unfortunately, this is a common characterization of the infertility/miscarriage community – older, stressed-out women who waited too long to have kids and are now turning to science to solve their problem.  Sad, but it is their fault. 

We all face this.  About six months ago, I was telling one of my former business school professors about Recurrent Pregnancy Loss Association and the importance of research into miscarriage and infertility because there is so much still unknown and unexplained.   He nodded along, then said it was “unfortunate” how many more people were dealing with infertility these days and posited that perhaps one of the reasons was because women are waiting to have their children until later in life.  This was a smart man.  An educated man.  But a man completely ignorant to the realities of infertility. 

It is true that rates of infertility and miscarriage are correlated with age.  But it is not true that infertility rates themselves are increasing.  A CDC National Health Statistics Report showed that the rate of “impaired fecundity” (difficulties getting pregnant or carrying a pregnancy to term) has remained nearly constant since 2002.  But even if this were not the case, I desperately want to tell this man the following:

1. Infertility is a multi-factorial, medical condition, please stop assuming age is the cause of our problems.  Many of us started trying for a family at a much younger age than we are now and have been on our fertility journey for a long time.
2. Male factor infertility is a cause for about a third of couples suffering from infertility, and multiple studies show that sperm count and quality decline with age, so don’t assume the problem is women waiting longer to have children.
3. Some of us didn’t meet our partner until later in life and weren’t inclined to start trying to conceive before then, so don’t assume we waited because we wanted to.
4. Some of us did make a deliberate decision to wait until we were older to start building a family, perhaps even knowing there were increased risks, but that doesn’t mean that our frustration, grief, or losses aren’t worthy of attention and compassion.

I am not ignorant of the science.  I understand that statistics are not in our favor.  Numerous medical articles detail the risk of aneuploid embryos (embryos with an abnormal number of chromosomes) by maternal age.  The risk sits around 30% for women under 35, jumps to 60% by age 40, and +85% by age 45.  A woman’s chances of naturally conceiving a chromosomally normal embryo are literally time stamped.  But the belief that infertility or miscarriage is simply a function of age serves to stigmatize and minimize a very real health problem.

A similarly triggering phrase for the trying to conceive community (TTC) is “just relax.”  All of us – and I mean ALL of us – have had someone tell us the story of their friend’s sister’s cousin who tried for years and then magically got pregnant once she quit trying and calmed down.  “It’ll happen when you least expect it, if you’d only just try and relax.” Barf.   

The LAST thing I wanted to hear when I was trying to get pregnant or stay pregnant, when I was feeling broken and traumatized, when I was hopped up on all manner of hormonal cocktails, when I was anxious and uncertain if I would ever be a mother was to relax.

I faced an impossible conundrum.  Yes, of course I wanted to take a break from trying again after every miscarriage, but I also felt a terrible urgency to start up again as quickly as possible lest my chances slip away from me entirely.  I felt older and less capable of success by the month.  So, when an uninformed advice-giver then assumed that my family building struggles are my fault, because I was just stressing about it too much, I kind of wanted to punch them in the nose.  

There are mountains of evidence to show that infertility and miscarriage cause stress, anxiety, and depression.  In fact, a literature review cited in a 2018 article in Dialogues in Clinical Neuroscience showed that 25-60% of infertile individuals experience anxious and depressed psychological symptoms. What is NOT proved is that stress, anxiety, and depression cause infertility and miscarriage.  Certainly, we are all healthier and better able to cope when we manage our mental health.  But this isn’t the cause of our medical, fertility related problems.  Would you tell a cancer patient to “just relax” or that their tumor will go away when they least expect it if only they stopped fighting so hard?  Of course not.  Cancer is disease that needs to be treated medically.  Guess what?  So is infertility.

Next time someone tells you about their struggle to build a family, rather than trying to identify or solve their problem simply try saying this:  “I’m sorry that you have been dealing with that, but I want to thank you for sharing your story with me.  It’s so important for people to talk about the challenges of infertility and miscarriage.  Please let me know what I can do to support you through this process.” 

Lena Dunham recently came out publicly with her personal story of endometriosis and resulting inability to bear children.  Her memoir “False Labor” is the cover story for the December issue of Harper’s Magazine.  A friend of mine shared a link to the article, but I admit I didn’t read it until I began to see the slews of critical, sometimes compassionate, and often angry reactions from the online infertility community. This post is an effort to explore that. 

Lena’s story is not encouraging.  Perhaps that’s why I didn’t mind it.  My own path to parenthood has been dark.  I avoided addiction, and I faced different diagnoses than she did, but I was also never able to approach it with the optimism that so many women in the online infertility community seemingly shared. 

In her story I read much of my own.  A socialization that taught me I could have anything I wanted if I only tried hard enough.  A belligerent belief that having children was my gender-given right – that it should be easy.  The questioning of my purpose as woman – as a human – in contemplating a potential life without children.  The harsh examination of my own privilege of access to care within (to use Lena’s words) the “fertility-industrial complex.” The despair and exhausted relief at coming to the end of the road. 

In fairness, parts of her article are unkind to the #IVFWarriors, the #miscarriagemamas and many of the other hashtag groups who have carved out a place for themselves on social platforms.  By her account we are a largely privileged, often delusional group of type-A, go-getters willing to do anything to have a baby.  But Lena’s critiques dripped with bitterness.  Her words were cynical.  Her grief evident.  I read her judgements as an attempt to deflect shame away from herself and onto others. 

Infertility and miscarriage are deeply isolating.  The online community creates a space for us when our in-person friends can’t understand us or tire of trying to.  It is not perfect.  It is not for every person or every part of the journey.  It is flawed as we are flawed.  But it is there to engage with or not.  It seems to me that Lena found a place online where she thought she fit, only to feel all alone again.  The subset of an already isolated group.  So, she lashed out.  Was it fair? No. Was it human? Yes.

The online infertility community is littered with positive messages.  Words of reassurance.  Offers of support.  Reminders that we are not alone.  Motivation to carry on.  Some women depend on this encouragement.  I spoke to one woman who told me that when she was going through infertility, she devoured other women’s stories because they gave her hope.

But different people need different messages.  In contrast, other women’s stories made me either jealous or sad, sometimes both.  I couldn’t read them without comparing myself, and I usually felt worse for the comparison.  It felt like I was on an impossible path, so their successes made my efforts feel even more futile.  When I was down on the mat, I wanted someone to say, “You can get up if you want, but it’s also ok to just lie here.” 

When you want to stay down, hearing “You can do it!” only serves to make you feel more like a failure.  I was ashamed to stop trying and it took me a long time to be ok with the decision.  I don’t think Lena’s fully ok with it.  But she didn’t really choose it.  The realities of her body forced the decision upon her. 

There aren’t as many online voices singing the virtues of “giving up” or “giving in.”  Maybe there aren’t as many because the effort of trying does pay off for lots of women.  But maybe there aren’t as many because we don’t always want to celebrate the women who wind up childless not by choice.  We don’t want to consider that they might be us.  More than anything, I think this is what her article tries to normalize.

I can paint my own story with different brushes.  I can use it to elicit guilt, or jealousy, or even gratitude.  I can step back into memories and let the pain wash over me in waves.  I can examine the experience in aggregate and applaud myself for strength and determination.  I can release all my desires and expectations and give them up to God.

I can do all this because it is actually all the above.  Cynicism, positivity, even faith are only tools we use to manage an absolute lack of control.  When we cling too tightly to one approach, it can make us unaccepting of others.  If our approach fails, we may become angry or defensive.  The way lies somewhere in the middle.  For me, there is always a bit of hope laced with my cynicism, a touch of doubt at the edges of my faith, an ocean of sad beneath the positivity. 

Lena gave an interview with People Magazine about her memoir.  Weirdly, I found it better expressed her point of view than her writing, so I’ll end with an excerpt from that interview which I think is a beautiful and succinct summation of the infertility journey:

“Infertility has a ripple effect — it’s not just about not being able to have a child, it’s about not feeling you understand your place and job in this world. Not understanding what your body was meant to do and not understanding what your role is as a woman, and I think it brings up that sense of feeling like you’ve lost your sense of your own role in the universe. There’s a great gust of depression that comes with that… I had to really untangle all of that to realize that I was still going to become a mother, but I was going to do it on my own terms.”

The Indian spiritual leader Sri Chinmoy said that “surrender is a journey from outer turmoil to inner peace.”  Lately, I’ve been in a bit of turmoil.

Over the summer I had another surgery to deal with my misbehaving uterus. 

After my sixth miscarriage, my period never returned, which is not normal.  I knew it was not normal, but I still I waited 6 months before telling my doctor, because I was exhausted from being a patient and I just didn’t want to deal with it. 

Six more months, many blood tests, and several diagnostic exams later it was determined that I had uterine adhesions (or scarring) blocking all flow out of my cervix.  This is called “Asherman’s syndrome” and it had likely resulted from my D&C.  The diagnosis felt oddly appropriate.  My losses scarred my spirit, why not my body too?  It felt like my uterus was doing a mic drop.  “It’s been fun, but we’re out.” 

I seriously considered not fixing it.  I think a small part of me thought the permanent eviction of Aunt Flo was my reward for enduring all the pregnancy losses. But in the end, my stronger desire was to return to a time when my reproductive health wasn’t a constant problem and the only conversation I had about my uterus was during my annual well-woman exam.  

And now, after the surgery, I am “happy” to report that my body is back in business.  Unfortunately, my reinstated cycle has allowed my mind to become newly susceptible to old questions, like, should my husband and I try again? 

Without my period, it was a non-issue.  We were done trying.  We were moving on.  With my period, like a moth to a flame, I am drawn again to the narratives of other women and the allure of diagnostic tests and treatment protocols we never tried.  Once again, I’m losing hours speculating whether a pregnancy outcome might be different now that I’ve worked through my grief and am less stressed.  Once more, I’m approaching my birthday aware of my ticking fertility clock and wondering whether I should give it one last shot. 

My sister asked why I persist in putting myself through these mental gymnastics, but I had no explanation for her.  It doesn’t make sense even to me.  We’ve made the decision to pursue surrogacy.  I know that not trying is better for both my mental health and the state of my marriage.  It’s not even that I want so badly to be pregnant.  It’s more that I can’t let go of the belief that my body should be able to be pregnant.  I’m still stubbornly trying to put the puzzle together.  And because of that, I can’t seem to get my head out of the rearview mirror. 

I called my fertility doctor to ask if there was anything we might try differently if we want to conceive again.  But having already exhausted most available medical interventions, she had little more to offer.   

I think that’s why I can’t stop worrying.  It is terribly uncomfortable to sit in a place of unknowing and not-doing; my brain resists and resents the lack of control.  I recently watched The Last Dance on Netflix.  In it, Michael Jordan said he can’t stop wondering what might have happened if they’d had another season.  And although my context is completely different, I understood his sentiment.  How do you walk away from the game when there might still be cards to play or moves to make?  How do you quiet the what ifs and remain confident in the path you’ve chosen?  It feels like my brain is on a mental stability ball, constantly trying to reposition itself to stay centered and not lose its balance.  

I’m currently reading Admiral William H. McRaven’s book Make Your Bed.  In one chapter he explained that during SEAL training, the instructors would sometimes order recruits to turn themselves into “sugar cookies.”  When this happened trainees would have to jump in the ocean and then roll around on the beach to coat themselves in sand.  Becoming a “sugar cookie” was arbitrary.  He couldn’t prevent it, nor did he find it productive ponder why he became a sugar cookie.  The only thing he could do was get comfortable with the sand and keep moving forward. 

I find this story helpful, because at the end of the day, it doesn’t matter why I can’t stay pregnant.  What matters is how I move forward.  My sister said life has a way of teaching us to submit to our lack of control, and if we fail to learn the lesson the first time, we eventually get another opportunity.  Well, I’ve had six opportunities, but I’m still learning.  I’m trying.  I’m trying to surrender to my reality rather than fixating on the past or obsessing over the possibilities.  I’m trying to breathe deep and give myself a break.  I walk my dog.  I pet my cat.  I hug my husband.  I call my friends.  Maybe one day I’ll even find the way to inner peace.

Today is Pregnancy and Infant Loss Remembrance Day. A day to remember all the children who ‘might have been’ and honor the pain of the mothers and fathers who lost dreams.

I had the honor and opportunity to share my story with Fruitful Fertility in order to help raise awareness about recurrent pregnancy loss. Fruitful Fertility is a 1:1 mentoring service for women dealing with infertility. They match women with mentors who’ve had similar experiences. The post below was originally published on their blog.

If, after reading this, you’d like to show your support to women and families who have lost pregnancies, my organization (RPLA) has created four different “selfie signs” for people to post on social media. They can be found here: www.rplassociation.org/connect. Please tag @rplassociation in your post.

“Sometimes I forget that I have been pregnant.  I think about my fertility experience in terms of my losses, not my pregnancies.  But I have been pregnant for a combined total of 45 weeks – that’s more than full term.  I’ve had nausea and night-sweats and sore boobs and exhaustion.  I’ve seen two heartbeats.  I have been pregnant.  Six times.  But I’ve never made it through a first trimester. 

For a time, the process of trying to get and stay pregnant stole my identity.  It affected my job performance and impacted my personal relationships.  It invaded my body and my mind.  It was a single note played so loudly and consistently that it muted all the other chords of my life.

My memory too, is littered with otherwise wonderful events remembered through the lens of my losses.  The moments themselves weren’t bad; I was with friends, or family, or on vacation, or at fun events.  But it’s as if there’s a scratch on the lens blocking certain shapes and distorting certain angles.  They are all slightly marred. 

It has been 18 months since my last miscarriage, and while the pain is not fresh, there are plenty of days I still grieve.  Anniversaries of losses can be hard, so can intended due dates, so can places or activities associated with the losses.  Mothers’ Day can be particularly challenging.  Receiving birth announcements and baby shower invitations can trigger sadness.  These are normal feelings, yet I suffer most of them in solitude and silence.  That’s why I appreciate the many stories shared during October Infant and Pregnancy Loss Awareness Month; they remind me that I’m not alone.  

My experience, the repeated cycle of conceiving and losing pregnancies, is called “recurrent pregnancy loss.”  It is a condition that impacts 1-2% of couples (10-15% of the infertility community), and while there is much known about it, still roughly half the cases remain medically “unexplained.”

I am one of these women.  The unlucky amongst the unlucky.  I don’t know why I can’t carry a pregnancy to term.  I’m not sure I will ever know. 

It has taken me a long time to accept this truth.  For years, I was desperate for a reason.  I wanted a game plan – something I could do differently in future to ensure a different outcome, because lacking a medical explanation for my losses, I often blamed myself. 

After every pregnancy I meticulously retraced my actions, mentally flogging myself for misbehaviors: I should have ordered decaf; I shouldn’t have taken that hike; I should have switched to glass water bottles instead of plastic.  I felt responsible for the outcome of my pregnancies.  Childbearing was something my body was built to do, and my inability to procreate made me feel like something essential was amiss.  I felt broken and I felt culpable. 

Time, intense therapy, and the knowledge that I tried everything helped lessen my guilt.  On my journey to motherhood, I saw multiple reproductive specialists, had several surgeries, took hormones, steroids, blood thinners, vitamins, and supplements.  I prescreened embryos and did two rounds of IVF.  I tried acupuncture and experimental medications.  I scoured the internet for information about healthy pregnancies and modified my diet and lifestyle accordingly – intermittently cutting out dairy, gluten, coffee, and sugar.  I did yoga and tried meditation.  I prayed desperately.  But nothing worked.  At this point, even my doctor supports me pursuing alternative paths to parenthood.   

I have the utmost respect for every healthcare professional I’ve seen these past years.  They have been intelligent and compassionate and have employed every tool at their disposal to try and keep me pregnant, but medicine has no more answers for me.  The facts are that:

∙       30% of infertility cases are unexplained

∙       50% of recurrent pregnancy loss cases are unexplained

∙       60% of stillbirths are unexplained

This is why my husband and I decided to start Recurrent Pregnancy Loss Association (RPLA) – a nonprofit organization dedicated to funding research into the causes of and treatments for recurrent miscarriage.

This year, more than ever, we have witnessed how quickly the scientific and medical communities can become galvanized to find solutions to challenging health problems.  It’s not a question of capability, it’s an issue of funding and focus.  Through RPLA our hope is that by convening the patient and scientific communities we can help other couples accelerate their journey to parenthood.  My husband and I may not get the answers we hope for, but perhaps we can prevent others from walking this path behind us. 

So this October, if you’re ready, if you’re able, in addition to celebrating stories of strength and healing, in addition to remembering our losses and honoring our pain, let’s also come together with the purpose to find solutions and advocate for answers.”

October is Pregnancy and Infant Loss Awareness Month.  This means there are a lot of pregnancy loss facts circling the internet and a lot of women sharing personal stories of miscarriage and stillbirth on social media.  The stories are often heartbreaking. But the sharing of them is wonderful.  As more women talk about their experience, the stigma around miscarriage lessens. As the general public becomes more aware of the burden of pregnancy loss, better support systems can be put in place for families.  I am inspired by and grateful for every person who is engaging in the conversation this month.  And sometimes it is also too much for me. 

I consider myself to be in a stable phase of my fertility journey.  I am not actively trying to get pregnant, which has removed some of the psychological pressure I was putting on myself and reduced my emotional frenzy.  I have been seeing a therapist for almost two years to work through my shame and grief.  As a result, I have created enough space to allow me to hear other people’s pain with compassion, and participate in infertility and miscarriage communities and conversations.  That’s why I started this blog; I was finally ready and able to participate. 

There is a HUGE community of infertility and miscarriage bloggers.  There are more than a few published memoirs on infertility and pregnancy loss, and a growing number of podcasts.  There are whole companies dedicated to supporting women trying to build their families.  But for the first four years of my fertility journey, I didn’t know any of it existed, and I didn’t want to. I don’t think I would have even read my own blog four years ago.  A woman who had lost six pregnancies and still had no baby, who talked at length about disappointment and grief… it would have been too overwhelming. 

It is incredible and brave when women share their story.  We should celebrate those women. But it is equally important to recognize the women who don’t share because it is either too hard or their pain is too fresh.

John Legend and Chrissy Teigen shared some of their most vulnerable moments with the world last week.  It was devastating and powerful; and some women couldn’t hear it, or care.  Not because they don’t think it’s sad, but because it requires all their energy to care for themselves.  Sometimes you only have the strength to carry your own experience.  Sometimes you have nothing left to hold other people’s emotions.  And that’s ok. We are all in different places and phases.

I recently read a story of a women who had 13 miscarriages; and then she had a baby.  Reading this brought up several distinct thoughts for me: (1) Joy. Yay, good for her! (2) Jealousy. Dammit, why did it work out for her but not me?!  (3) Befuddlement. How had she endured 13 losses? I was emotionally shattered from six. (4) Self-doubt. Was I just weak? Should have tried harder? 

Even after my self-work and supposed emotional “stability,” rather than be inspired by her story, I was hopeless, self-critical, jealous, and defensive.   I would love to get to a point where I can hear stories like this without such messy feelings, but it will take more time and work.  I am still healing. 

Some women derive strength from miscarriage and infertility stories.  Engaging with others gives them hope, normalizes their feelings, and makes them feel less alone.  But there also women like me who – while wanting all those things – can’t always safely let others into that tender place. 

Hearing other people’s stories about infant and pregnancy loss can be triggering.  It’s ok.  You don’t have to engage – with either your pregnant friends, or your bereaved ones.  You are allowed to take the time and space you need to heal.  It doesn’t mean you don’t understand that other women are hurting.  It doesn’t mean you lack perspective, are weak minded, or cold hearted.  It just means healing is hard. October is still for you.  I’m sorry for your loss and pray you will find support and peace as and how you need it.

September is PCOS Awareness Month, so I want to take the opportunity to do a little PCOS PSA.  (Although, I’ve never approached a post in this way before, so feel free to let me know if it’s useful.)

PCOS stands for “polycystic ovary syndrome” or “polycystic ovarian syndrome.”  It is: a common health problem caused by an imbalance of reproductive hormones. The hormonal imbalance creates problems in the ovaries. With PCOS, the egg may not develop as it should or it may not be released during ovulation as it should be.(www.womenshealth.gov)

PCOS impacts 1 in 10 women and is the leading cause of infertility.

Understanding and awareness of PCOS has increased dramatically in recent years, and the PCOS Challenge, an international nonprofit, has done a great job educating women about the disease and advocating for support and research.

This is important because I think historically doctors had a very specific idea of how a PCOS patient would present.  In fact, when I was first told I might have PCOS, I distinctly remember one doctor/friend (luckily a non-ob/gyn), telling me that I couldn’t have PCOS because I wasn’t overweight and didn’t have a beard.

There are several things upsetting about this comment, not the least of which is that I am actually incredibly sensitive about my level of facial hair!  More importantly, it paints a very narrow picture of PCOS, when in actuality the syndrome can manifest quite differently from woman to woman.  The name itself is even somewhat misleading because not every woman with PCOS will have polycystic ovaries.  Instead, there are a number of PCOS symptoms any one of which may or may not be expressed in a PCOS patient.  This is why many women with PCOS are improperly diagnosed or undiagnosed (according to PCOS Challenge).  

The first time a doctor suggested I might have PCOS was in 2012 when I didn’t get my period for 6 months after going off birth control.  I don’t even think she ran blood tests, she just said PCOS was something we “may want to investigate” if my cycle didn’t return.  Of course, this passing remark sent me down the internet rabbit hole.  Dr. Google convinced me I did indeed have PCOS, and a plethora of online gurus promised to cure me if I would only cut EVERYTHING out of my diet, exercise daily, and learn to be more mindful.  (Please note my heavy cynicism here…)

That said, paranoid about insulin resistance (commonly associated with PCOS) and the risk of diabetes, I did start jogging more often and became slightly more conscious about my diet.  Smart moves regardless of whether I had PCOS.  And related or not, my periods did return to a regular – if slightly extended – cycle.  I didn’t think any more about it until I went through my first infertility work up. 

During an ultrasound, my care team noted the characteristic “string of pearls” around my ovaries indicating that multiple follicles were developing at the same time (another common characteristic of PCOS).  But while I had polycystic appearing ovaries, my hormone levels were within range, so I did not meet the strict clinical criteria for a definitive diagnosis.  I was also not obviously insulin resistant.  My blood sugar was normal, albeit on the upper end of the normal range. 

Still I was given metformin (a drug that helps control blood sugar), told to limit my carbs, and try to lose 5% of my body weight.  It was one of many times when diagnostics revealed nothing conclusive, but I was treated anyway… just in case… just because we all wanted to feel like we were doing something. 

As it turned out, PCOS was not the villain in my fertility story. While PCOS is known to be related to infertility, its link to miscarriage is still medically debatable.  However, it may still have a role to play in my long-term health.  Here are some scary facts (source):

• Women with PCOS constitute the largest group of women at risk for developing cardiovascular disease and type 2 diabetes.
• Some studies have shown women with PCOS to be at three times higher risk for endometrial cancer and may also be at increased risk for ovarian and breast cancer.
• Some studies have shown due to symptoms of anxiety and depression, suicide attempts are up to seven times more common in women with PCOS than other women.

If you think you may have PCOS, please talk to your doctor.

If you are looking for supportive resources, here are a few I’ve found.  This is certainly not exhaustive.

• PCOS Challenge a non-profit advocacy and patient support organization
• “PCOS for Dummies” (link) good for the basics
• “PCOS Diet for the Newly Diagnosed” (link) I have enjoyed many of recipes in this book, so much so that it survived my “tidying up” purge
• “8 Steps to Reverse Your PCOS” (link) I liked how this book was structured, and the detail it went into around tests and results, but it definitely takes a naturopathic and integrated medicine approach which you should be aware of before reading

There is a booming online community of women with PCOS. If you have this diagnosis, please know that you are not alone. It can feel frightening and demoralizing to learn you have a chronic health condition that must be managed. But there are people and resources that can help, and we each have strength more than we know. And after all, RBG said, “So often in life, things that you regard as an impediment turn out to be great, good fortune.”

It is impossible to fully address the topic of infertility without talking about sex.  But if I have sometimes been ashamed to discuss my fertility challenges, I have been absolutely loath to bring up its impact on my sex life.  Sharing this aspect of myself feels like inviting spectators into my bedroom to examine the sheets.  Yet it cannot be ignored.  Miscarriage and infertility had a material impact on my sex life. I don’t believe I’m unique in this experience, and I also believe that one of the most effective ways to heal from it is to talk about it.  So, here we go, let’s talk about sex.

There are many reasons to engage in sex.  Some people chase pleasure, some like to experiment, others seek out fantasy – a way to escape themselves.  Mostly, I crave closeness.  I’m a hopeless romantic.  It’s why I read poetry, watch sappy movies, and listen to love songs.  I want the butterflies.  I pursue passion.

I remember the exact moment I realized I was in love with my husband.  I was on the Bryan Center walkway on Duke’s campus headed back to my dorm room when the feeling washed over me – a spark started in my heart and sent tingling waves of emotion through my nervous system and I knew. 

Falling in love was easy when I was 19.  Peering over the precipice of adulthood, I knew it was not a trip I wanted to take alone.  Every conversation and every interaction I had with my husband felt vital to my future.  Intimacy was as essential as breathing.  I wanted to blend into him until we were of one mind and one body, or as Kahlil Gibran says, “to melt and be like a running brook that sings its melody to the night.” 

With time and maturity I disentangled from him and became my own individual within our relationship, and the focus of sex changed from conjoinment to connection.  That’s why it felt exciting and appropriate to embark on a journey of family planning.  It gave our love a purpose – the opportunity to create something.  And when we got pregnant, I felt like our love transmuted into something sacred inside of me.  That is, until my body betrayed me.

Miscarriage was traumatizing.  There was the physical pain – obviously – but there was also the psychological feeling that my body had been violated and that I was no longer in control of my person.  The resulting impact on my relationship was significant.  Good sex and true intimacy require vulnerability.  In order to give your body to another person, you must first let go of it yourself.  Yet after my losses, I was unable to do so.  Love and desire felt unsafe; instead of creating life, they’d invited death.  I was afraid that sex could only ever bring me to a place of sadness and pain. Compounded on that, there was one year in the middle of our losses when we couldn’t get pregnant at all.  Twelve months of trying and tracking and testing; and every month the waiting, the hoping, and ultimately, the disappointment. 

Miscarriage was hard on our marriage because we didn’t know how to talk about it, and we pulled away from each other instead of grieving together.  But our year of failed conception was something different entirely.  Disappointment dominated rather than feelings of sadness.  Sadness was exhausting and overpowering; but it was accessible.  Sadness could invite others to hold it.  Disappointment was harder to share; it was personal and bitter and brutal. 

Overt time, fear and failure defiled my sexuality.  Sex went from being an act of intimacy to a dreaded chore.  “Planned intercourse” around my ovulation felt prescribed and transactional instead of spontaneous and special – even the term was emotionless and clinical.  What should have been languorous and fun became efficient and goal oriented.  My husband struggled to understand how I could suddenly perform when I was ovulating, but otherwise needed to be in the mood. I struggled to comprehend why he could be in the mood anytime except when there was pressure on him to perform.  Many fights ensued.  Multiple nights were spent crying in separate rooms.  Then, of course, we moved on to IVF and no longer needed to have sex at all in order to get pregnant…

This was not how I had pictured my life or my relationship. We loved each other very much, but I think it’s important to admit that staying married was not a foregone conclusion. Infertility can break a relationship. A dysfunctional sex life can shatter intimacy. Some couples don’t survive this. My husband and I have been married for 11 years.  For half of those we’ve been trying to start a family.  Concerted effort and couples therapy enabled us to pull our sex life back from the brink and unshackle it from the weight of procreation, but we are still working to find the way back to one another.

There are moments when I feel hopeless in our efforts; times when I yearn to recover the innocence and abandon I felt when I was 19, though I know it is impossible. But in these moments, I’m reminded of one of the bible passages sung at our wedding: Song of Solomon chapter 8 verse 6, “Many waters cannot quench love, neither can floods drown it. For love is as strong as death.”  

Infertility and miscarriage washed over us like a flood, breaking our levees and soaking us in sorrow. But our love hasn’t been drown; so we rebuild. Brick by brick we are reconstructing our palace of emotional and physical connectedness.  Although our relationship has changed, once again “we’ll celebrate, we’ll sing, we’ll make great music.” (Song of Solomon 1:4)